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March 1, 2011 -- Family members and others who act as surrogates, making treatment decisions for incapacitated loved ones, are sometimes affected adversely for months or years, according to a new review of published studies.

''Making these decisions has a profound effect on at least a substantial minority of surrogates, and it's often negative," says researcher David Wendler, PhD, head of the unit on vulnerable populations at the National Institutes of Health.

Guilt, stress, and doubt about whether the right decision was made are often reported by these surrogates, he found.

That's understandable, he says, because of two factors: "The vast majority of these were life-and death decisions," he says. And most surrogates did not have specific instructions in the form of an advance directive to be sure they were doing what their loved one wanted.

''It's more likely to be much more stressful and much more likely there will be regret, remorse, and second-guessing if the surrogates don't have a sense of how the patient wants to be treated," Wendler tells WebMD.

Those loved ones who had instructions from the patient about how they wished to be treated did much better, Wendler says. "When they have this information, they feel they are 'channeling' the wishes of the patients," Wendler tells WebMD.

Wendler reviewed 40 previously published studies, and his findings are published in the Annals of InternalMedicine.

Difficult Decisions by Surrogates

Wendler searched medical literature databases, gathering studies done before July 2010. He then focused on the 40 studies that included data from 2,854 surrogates, more than half of whom were family members of the incapacitated patients.

The surrogates were surveyed several months to years after making treatment decisions. Most of the studies focused on end-of-life treatment decisions, such as deciding whether to start or withdraw life-sustaining treatments.

Comments from the surrogates reflect the difficulty, with many saying it was the hardest thing they ever did.

"In end-of-life cases, if you decide to put them on a ventilator you will later think, 'Oh, I tortured them,'" Wendler says. "If you don't, you'll think you should have."

The emotional conflicts felt by the surrogates after the decision, he says, may be linked to whether the loved one had instructions or at least a conversation about how the family member felt about treatments, he says.

But most people, Wendler says, don't have an advance directive. "About one-fourth of people fill out an advance directive," he says, citing a survey done in 2006 by the Pew Research Center for the People and the Press.

Those who did, however, saved their loved ones who had to make treatment decision much angst, Wendler says.

"The chances there are going to be guilt and bad feelings on the part of the surrogate often depend on whether they have information from the patient about how they want to be treated," Wendler says.

It's not foolproof, he says, but it does help. "At least in some of the cases, when the surrogate felt confident about what the patient wanted, they will say things like, 'I felt good, I had the opportunity to protect my dad from things he didn't want.'''

Second Opinion

Wendler's findings make sense to Daniel Sulmasy, MD, PhD, the Kilbride-Clinton Professor of Medicine and Ethics at the University of Chicago, who has also published on the topic.

Focusing on surrogates' stress is relatively new, he says. "For the last 30 years in bioethics, we have been emphasizing the autonomy of the patients, not recognizing that the person in most of the tough situations [regarding decisions about treatment for incapacitated persons] is not the patient but the surrogate,'' Sulmasy tells WebMD.

"We've almost acted as if the surrogate is a passive conduit of the patient's preferences instead of a real human being often bearing a very close relationship with the person about whom the decisions are being made."

As a result, he says, "it should not be surprising to us that this is stressful. What may be more surprising is, it's taken a while to look at it."

Sulmasy has also found that those who have an advance directive in place "or at least a conversation about their wishes" spare their surrogates much stress.

''Being a surrogate can be as stressful as having your house burn down," Sulmasy says, citing research which found the stress scores of those who were a surrogate were sometimes similar to scores of those who had had a house fire.

''We need to do more research about trying to make it easier for family members," he says. That should include giving doctors and other health professionals more guidance about how to approach surrogates, how to talk to them, and when, he says.

The findings point to a need for more people to fill out advance directives that spell out their wishes about treatments they do and don’t want, Wendler says.

The National Hospice and Palliative Care Organization offers information about advance directives, including state-specific information.